Therapy, devotion help 5-year-old girl defy predictions

ORLANDO SENTINEL FAMILY FUND HOLIDAY CAMPAIGN

Lilly Kurtz delights in playing with toys during class at the… (Joe Burbank, Orlando Sentinel )

November 24, 2010|By Kate Santich, Orlando Sentinel

In a Winter Garden strip-mall preschool, the unlikely happens every day.

There, 5-year-old Lilly Kurtz, a chubby-cheeked child both fragile and stubborn, has learned to walk, climb stairs, play with other kids and, most recently, talk.

It might not seem like much for a kid old enough to be in kindergarten. But for Lilly — who doctors said would never do any of those things — it is testimony to her parents' extraordinary devotion and the hard work of a nonprofit called UCP of Central Florida.

The charity, one of the many nonprofit agencies supported by the Orlando Sentinel Family Fund Holiday Campaign, has offered support, education and therapy to children with disabilities for nearly 50 years. It has helped changed Lilly's life for the past four.

"In the beginning, when she first went there, she couldn't even chew," said her mother, Tiffany Kurtz. "She wasn't walking too well, she was running into everything and she wasn't very coherent. She should have been starting to speak then, but she couldn't even mumble a single word. She wasn't even trying to speak.

"But the first year she spent at UCP, she really changed."

To Tiffany, just 17 when her first and possibly last child was born, it seemed "like a miracle."

Devastating news

There is a moment of equal parts anticipation and worry just before a new mother sees her child for the first time and takes inventory. Does the baby have all its limbs, fingers and toes? Are there two eyes and two ears? Does he or she at least look normal?

For Tiffany, the moment came in a surreal fog. She remembers hearing her doctor's troubled voice just as the first of a series of seizures made her lose consciousness. That whole first week of her daughter's life remains a blank.

Tiffany and her husband, Ryan, were in many ways children themselves when Lilly was born. Ryan was working at a McDonald's, and Tiffany, who had a learning disability, had dropped out of high school. The two had met in a shopping-mall bookstore a year earlier and had fallen in love, as Tiffany recalls, as soon as their eyes met.

The pregnancy had seemed normal, but once out of the womb, the infant girl clearly had a problem.

Her head was markedly smaller than it should have been. She had a sometimes- genetic condition called microcephaly, caused by a lack of full brain development. A doctor told the young Winter Garden couple that their daughter was probably blind, deaf and incapable of learning to walk. She would function, he said, in little more than a persistent vegetative state.

In addition, Tiffany had apparently developed a serious heart condition during the pregnancy.

"That first week, I was worried about taking care of Tiffany, protecting Lilly and losing my job," Ryan said. "And there were family issues, too. I was under a lot of pressure."

For many relationships, that sort of pressure can exact a fatal toll. For Tiffany and Ryan, it brought them together.

Helping Lilly get better became the focal point of their lives.

'One day at a time'

For three of the past four years, the family had no car. In summer thunderstorms and winter chills, Ryan and Tiffany walked 40 minutes, twice a day, to take Lilly to and from the West Orange campus of UCP. Specialists there have given the child speech, occupational and physical therapy as well as intensive classroom work to try to catch her up to her peers.

A couple of months ago, they taught Lilly to say her first pair of sentences:

"I love Daddy. I love Mommy."

Her parents were elated.

"She has made great progress," said the child's physical therapist at UCP, Jenny Badger. "Sometimes, the parents get really devastating, worst-case-scenario news from the doctors, and it's overwhelming. We try to just take things one day at a time. Lilly has been amazing."

Now her teacher is working with her on learning the alphabet and numbers. At home, living with Ryan's mother, Lilly's parents work with their daughter on other issues. Because the girl once couldn't tolerate being touched, for instance, Tiffany and Ryan took turns stroking her with soft-bristled paint brushes, sometimes for hours, until she would fall asleep.

Tiffany still has to hand-feed her daughter, who was 4 before she could handle solid food.

No one can say how much progress Lilly will be able to make or how long she might live. As her body grows, her skull will not. Her smaller head, not particularly obvious at the moment, will become more noticeable. Recently the girl has developed trouble regulating her body temperature, too. More than 15 minutes in the heat on a summer day could kill her.

And because of Tiffany's heart condition, doctors have warned her not to risk another pregnancy. Lilly will be her only child.